posted
I have been to the ER five times. Once for knee pain, diagnosed with RA. Again with neck and chest and leg pain with swollen glands, sent home with muscle relaxer and anti-inflammatory.
Third time for leg and knee and chest pain and confusion/disorientation, given same meds again. Fourth time for severe chest pains, I really thought I was having a heart attack, pains shooting into arm and leg and a terrible headache, the worst I have ever had.
I was sent to the cardiac unit and was there for four days. I had an cat scan, ultrasound on legs, EKG, blood labs drawn. They said everything was normal but I had a slightly elevated thyroid.
They told me to see a psychiatrist at discharge, said it was stress. Last Wednesday I went back to the ER feeling like a crazy woman with another bad headache and pains again, my vision is getting blurry and I am getting confused.
The DR asked if I had been bitten by a tick and I have, many times at the beginning of the spring when I started the yard work. I have also been bitten many times before this season. She started me on doxy and I have been taking it five days today.
My daughter asked me why my face is droopy and why I am slurring, my chest pains are back and I am feeling terrible. I don't know what to do, as I know they won't help at the ER.
Can anyone give me some advice I have been in tears all afternoon I am so scared... I have an appointment for next week with my primary care DR who I have never seen before... Also, I am in CT, in the New Haven area... Thank you so much in advance...
posted
It does sound like Lyme Disease. Don't be surprised if most doctors will not treat adequately. You will want to post in seeking a doctor to find a lyme practitioner near you.
You also might want to watch Under Our Skin, a documentary about Lyme Disease so you can learn all you can about what you are facing with this illness. It is available on Netflix and free on Hulu.
Welcome to Lymenet. Keep reading, you'll find lots of good information here.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you for your prompt response. Someone has sent me info on a few local DRs, much to my surprise. I don't know if they are in my network. I am still in shock it took five visits to the ER before they knew what was wrong, it baffles my mind.
Posts: 3 | From Connecticut | Registered: Aug 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by AnniesGhostface: She started me on doxy and I have been taking it five days today.
My daughter asked me why my face is droopy and why I am slurring, my chest pains are back and I am feeling terrible.
This can be caused by infection of the seventh cranial nerve, and may be due to Lyme Disease or a virus.
Your symptoms might be due to the antibiotic killing off the Lyme bacteria. The dead bacteria leave behind toxins that are poisonous to the nerves, and which cause many of the Lyme symptoms. (Jarische Herxheimer reaction.)
Physicians sometimes prescribe steriods for Bell's Palsy, to reduce inflammation. Some people get better by themselves, showing improvement in a week or two.
If you have problems closing one eye, it may dry out when you sleep. You'll need to apply a small amount of opthalmic ointment and tape it shut with silk tape when you sleep.
For the herx reaction, you can provide liver support to help the liver detoxify the neurotoxins left by the dead Lyme bacteria.
Milk thistle Magnesium Fish oil Undenatured whey N-acetyl cysteine Acetyl L-carnitine Alpha lipoic acid CoEnzyme Q10
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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quote:Originally posted by AnniesGhostface: Thank you for your prompt response. Someone has sent me info on a few local DRs, much to my surprise. I don't know if they are in my network. I am still in shock it took five visits to the ER before they knew what was wrong, it baffles my mind.
It took me over THIRTY YEARS to get diagnosed. I was told in high school that I was lazy. In college that I drank too much. As an adult that I was still sick from the flu I had months earlier. Later, that I had psychological problems. I finally figured it out myself and DEMANDED to be tested. My doctor said, "I will test you but only to prove to you that you are not sick so that you will take care of your psychological problems."
The Lyme doctors will not be in your network. Almost all of us have to pay out of pocket for our doctors because Lyme doctors typically do not accept insurance. You will understand if you watch Under Our Skin.
BTW, I am well today, it took three years, but I got well. It does baffle the mind.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
OMG!!! The ER DR just called with the results of my western blot and told me she "thinks" it's negative. I asked her if she could tell me what bands were reactive and she told me flat out "no."
Not understanding why, when on Wednesday she was almost positive I had Lyme and now she is recommending a neurologist. She said it might be a good idea to see a DR that specializes in infectious diseases. Total contradiction.
I called my old primary care DR who is no longer in my network and she flat out told me she knows "not a whole lot about the Lyme VIRUS."
Called my new primary care DR for the follow up that was recommended and the secretary asked me why I needed to be seen, that two weeks of antibiotics should be sufficient.
How is it that someone with no medical background whatsoever can do less than 24 hours worth of research and know more about this disease than a licensed DR???
I have been up all night reading anything and everything I can, I also watched the doc... I seriously don't wanna have to go through what so many other countless people have had to endure.
I am a a loss, I am tired of being sick. I am not a hypochondriac, the reason I have never seen my primary DR is I have been in generally good health and for the past five years or so I haven't had to see a DR at all...
Posts: 3 | From Connecticut | Registered: Aug 2011
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posted
i know how you're feeling! it took me 4 er visits and 15 doctors to get "some" answers. my test came back equivical on the elisa and only two bands on the western blot but luckily my doctor started treatment. he told me i had lyme in the past but its not active. i take doxy 4 times a day for 6 weeks. i'm on my 4th week and finally starting to see some improvement...finally!
it started almost 6 months ago with a really high fever one day so they told me a had a uti and i took abx for two days and i got so dizzy, lightheaded and dazed. everything looked dream like. i got so weak i needed help walking. i went to the er and said i was prob just dehydrated. the dizzy dazed feeling never went away. the vertigo was so bad i could barely function. i missed 3 weeks of work and was going to primary doctors, i was making appts with any specialist i could think of neurologist, gyno (thought hormonal imbalance)....who referred me to an endocrinologist. started having heart palpatations and chest pain, so back to the er and to a cardiologist.
they all basically blew me off and told me it was stress and axiety. a few weeks later my vision went blurry and my memory was getting bad. i couldn't think right...i told my friends a felt like i was losing my mind...like alzheimers or something. i was so exhausted and would get depressed because i couldn't do what everyone else was. i would cry to my mom and at work and just say i'm so tired of being sick! i've had every test immaginable and it was all coming back normal...they all told me i should be on anti depressants....which i refused.
finally during one of my emotial meltdowns to my mother...she mentioned a holistic doctor. at that point i would try anything! i saw him right away and i started taking vitamins immediatly. cod liver oil, vit c, p 5 p, magnesium, a multi, b-2, b-12, vit e, alpha lipoic acid, inositol....within 4 days i felt signifigantly better....people noticed right away. but over the next month or two i was not near where i should be.
still have the vertigo, blurry vision, neuro problems, pain started in my calves and joints. so finally after 8 rounds of blood work..i asked to be tested for lyme and sure enough i had the anibodies. technically i tested neg on the western blot but i read and read and i'm convinced its lyme. i believe the vitamins boosted my immune system to help fight the lyme. i'm in my 4th week of abx and my vision has been getting clearer, i'm not as dizzy, and my thinking has improved. i even slept for two nights with no pain. i have hope now....hope that i WILL feel like myself again.
you sound a lot like me...i didn't even have a primary doc before this...i was in good health besides a few colds and flus....and then everyone thought i was a hypocondriac because i was going to all these docs. i'm a 33yr old single mom was determined to get answers.
the most important thing to do while taking the antibiotics is take a probiotic with it!! i take klair labs probiotic complete. most likely you will get other infections like a yeast infection or uti. also candidia can grow in your body. also it helps with stomach issues you might have with taking abx.
good luck and follow what you believe...not what these doctors say!
Would you please click on the "pencil/pad" icon next to the date and break up your long paragraph for us? Most here cannot read large blocks of print. I hope Annie can read it!!
They don't WANT TO help you. They KNOW what they are doing!! It is your RIGHT to get copies of all tests and NOTES from the hospital. Ask for it now.. you'll probably find out that your test was positive!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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